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Disability Policy – Sources for Evidence

Social Policy Research Centre September 2008

au ISSN 1446 4179 ISBN 978 0 7334 2684-1 Submitted: June 2008 Published: September 2008 . Australia.unsw. or contact: Publications.sprc. SPRC. Telephone: +61 (2) 9385 7802 Fax: +61 (2) 9385 7838 Email: sprc@unsw. 2052. University of New South a full list of SPRC Publications see. Sydney.

and Fisher fax 61-2-9385 7838 Suggested Citation Edwards. Sydney. (2008) . email karen. University of New South Wales.R.Authors Robyn Edwards and Karen Fisher Contact for follow up Karen Fisher and Robyn Edwards ph 61-2-9385 7800.edwards@unsw. R. Social Policy Research Centre. Disability Policy – Sources for Evidence. SPRC Report 15/08. .au. robyn.

.................................................................................................................................... 12 Government Disability Agencies .. 12 6............................................................................................................................1 6....................................... 12 International Resources................................................................................................... 6 4 Research and Academic Bodies ................................................................2 6... 14 i ................... 13 References .....................................................DISABILITY POLICY – SOURCES FOR EVIDENCE Contents Summary .........................................................3 6...... 2 2 Journals ...................................................................................................................... 13 Mailing Lists Relevant to Policy Change ............................... 3 3 Publications .................................................................................................................................. 8 5 Data Sources.............................................................................................................4 Disability Peak Bodies .... 1 1 Background ............................................................................................... 10 6 Other Sources of Evidence Based Practice ...........................

a listing of Commonwealth. These include the National Disability Administrators. listing of selected peak bodies. Disability Policy and Research Working Group. including the web-sites of selected peak bodies. It is a compilation of the key information and evidence sources in the disability policy area. including the newly ratified United Nations Convention on the Rights of Persons with Disabilities. The report contains information on key journals. Centre for Developmental Disability Studies and the Australian Family and Disability Studies Research Collaboration. It includes key research and evidenced based documents prepared by the Australian Bureau of Statistics (ABS). including disability. Section 1 provides background about current concepts and definitions in disability policy in the Australian context. publications. Section 3 contains a selected listing of key publications. ABS and the CSTDA National Minimum Dataset. Journal of Applied Research in Intellectual Disabilities. Social Policy and Society and the Journal of Social Policy. The journals listed are: Journal of Disability Policy Studies. and the Journal of Intellectual Disability Research. Disability Studies and Research Centre. Section 4 contains information about research and academic bodies undertaking evidence-based research in the disability area. Australian Institute of Health and Welfare (AIHW) and the Productivity Commission. In addition two major UK Social Policy journals are included.DISABILITY POLICY – SOURCES FOR EVIDENCE Summary The aim of this report is to inform and enhance the disability policy development and implementation process in NSW. key data sources. Disability and Society. and listing of government disability agencies. Section 6 contains additional sources of evidence based practice. Journal of Intellectual and Developmental Disability. Social Policy Research Centre 1 . Social Policy Research Centre. Section 2 contains a listing of the key academic journals which contain contemporary articles on a wide range of policy and practice issues of relevance to the disability sector. research and academic bodies undertaking evidence based research. State and Territory disability agency websites. These journals contain a wide range of articles on all social policy areas. The information is current as at June 2008. Section 5 contains information about key data sources. including the AIHW. and two regular email lists to consider subscribing to.

disability is a social experience based on difference in the same way sexism and racism are understood. The experience of disability is also likely to be intensified when experienced in combination with other social difference based on gender. publications. Impairment refers to the physical. political and cultural life. This results in people with impairments facing physical. culturally and linguistically diverse backgrounds. The information is current as at June 2008. research and academic bodies undertaking evidence based research. More recently. sensory. Support needs refer to need related to impairments that people have for support to participate as other members of the public. which they rationed over the number of people needing services. intellectual or behavioural conditions people experience. key data sources. private service agencies and sometimes to the person with disability or someone on their behalf such as a family member. such as health. organisational. housing and employment services. with the action implication that the person must change in order to fit into society. disability support agencies were government or nongovernment organisations funded through government block funding and donations. medical and welfare models of disability. academics. age. The report contains information on key journals. people with disability and their advocates. families and caregivers or from formal support from mainstream services. The experience results from the way social organisation fails to take account of support and access needs. The support needs can be addressed through informal support from social networks. In this understanding. and may or may not equate with medically diagnosed conditions. government funding has also extended to individual funding. and specialist services. they may be sustained or intermittent. listing of selected peak bodies. Social Policy Research Centre 2 . The social perspective is distinguished from the historically dominant. These may be present from birth or acquired at any time. with the action implication of dismantling the social and physical barriers to participation and inclusion of people with disability. attitudinal and economic barriers to their participation in social. allocated to NGOs. economic. depending on the person’s particular needs. education. such as friends and family members and paid support workers. sexuality and economic disadvantage. The social perspective of disability locates the experience of disability in the social environment. Traditionally. and listing of the Australian State and Territory disability agencies. It aims to be of use to policy makers. such as disability and mental health services. government and nongovernment organisations. social. Social perspectives of disability distinguish between the terms 'impairment' and ‘disability’. which locate the problem of disability in the person’s impairment. People who provide support include informal carers. Disability refers to the social experience of people as a result of their impairments. psychiatric.DISABILITY POLICY – SOURCES FOR EVIDENCE 1 Background This short paper provides information about evidence sources in disability policy research. researchers. Indigenous background.

medicine. set against a background of change in the ways in which disability is viewed and responded to. supported employment. Disability & Society This journal provides a focus for debate around issues including human rights. S. Articles have implications in fields such as education. Topics covered include community living. multi-disciplinary readership. public health. law.sagepub. sexuality. discrimination. Examples of articles published recently include: Hughes. 52-64. and law related to people with disability. A. 22(7). school violence policies and interventions. social work. Putnam. The Journal publishes articles that represent a wide range of perspectives. Lord & F. 188-198. sociology. Occasional special series discuss current problems or areas needing more in-depth research. family studies. communication.. http://dps. definitions. quality of life. B. Journal of Disability Policy Studies. R. 701716. challenging behaviour. medication. (2005). http://www. policy. mental health and service provision. N. Yuen (2007). Disability & Society. and systems change in supporting individuals with disabilities. & A. prioritizing the voices of people with disability. and public administration. for example disability and ageing. J.Winster (2008). 673-684. policy and practices. (2007). 245-253. M. Examples of articles published recently include: Hutchison. family issues. 19.asp Journal of Applied Research in Intellectual Disabilities JARID is an international journal which presents findings from original applied research in intellectual disabilities. J. ‘Role of Canadian userled disability organisations in the non-profit sector’. Arai. oppression and disability. ‘Early autism detection: implications for pediatric practice and public policy’.co. Pedlar. & L.tandf. Disability & Society. policy concerning families of children with disabilities. ageing. ‘Disability access and e-government: an empirical analysis of state practices’ Journal of Disability Policy Studies. ‘Being disabled: towards a critical social ontology for disability studies’. 22(7). 18. aimed at an international. A major focus is quantitative and qualitative policy research. Rubaii-Barrett. ‘Conceptualising disability: developing a framework for political disability identity’ Journal of Disability Policy Studies. The journal is a forum for the Social Policy Research Centre 3 .DISABILITY POLICY – SOURCES FOR EVIDENCE 2 Journals Journal of Disability Policy Studies This journal addresses ethics. 16. Wise (2008).

. psychiatric.blackwellpublishing. multidisciplinary journal in the field of intellectual and developmental disability. medical. educational. ‘Beset by obstacles: a review of Australian policy development to support ageing in place for people with intellectual disability’. Journal of Applied Research in Intellectual Disabilities.asp?ref=1360-2322&site=1 Journal of Intellectual and Developmental Disability This journal of the Australasian Society for the Study of Intellectual Disability (ASSID) is an international. 21(3). The journal publishes original qualitative and quantitative research papers. 81-94.. Harvey (2008). ‘Care standards in homes for people with intellectual disability’. J. book reviews. Journal of Applied Research in Intellectual Disabilities. http://www. C. Clegg.DISABILITY POLICY – SOURCES FOR EVIDENCE dissemination of ideas to promote valued lifestyles for people with intellectual disabilities. Ping-Yi Tzou. Hutchinson & J. 246-256. genetic. Murphy. ‘Overweight and obesity among children with developmental disabilities’. ‘Family structure in Norwegian families of children with disabilities’. Small & L. conceptual articles. ‘Respite care as a community care service: Factors associated with the effects on family carers of adults with intellectual disability in Taiwan’. and/or inform public policy and practice. Almack & A. which increase knowledge on the treatment of intellectual disability and associated impairments. & J. 21(1). H. Examples of articles published recently include: Bigby. 210-218. 33(1). De. Journal of Intellectual and Developmental Disability. ‘Tensions around inclusion: reframing the moral horizon’ (2008). 76-86. opinions and perspectives. K. Baur (2008). 43-47. http://www. psychological and sociological studies. Mansell (2008).uk/journals/titles/13668250. Examples of articles published recently include: Beadle-Brown. Yueh-Ching Chou. J. and includes research relating to biological. 33(1). Lundeby. literature reviews. 21(3). Journal of Applied Research in Intellectual Disabilities. Teppo Kroger & Wan-Ping Lee (2008). Journal of Intellectual and Developmental Disability. 33(1). Examples of articles published recently include: Social Policy Research Centre 4 .html Journal of Intellectual Disability Research This journal focuses on the study of intellectual disability. J. Cheng-Yun Pu. A. E. Journal of Intellectual and Developmental Disability. 12-21.. Tossebro (2008).

Taylor-Gooby. N. ‘Social Policy and Human Rights: Rethinking the engagement’ (2008). or analyse issues in the making and implementation of social policies. ‘Strategies for the prevention of social exclusion: an analysis of the Children’s Fund’. It places particular emphasis upon articles which seek to contribute to debates on the future direction of social policy.cambridge. Social Policy Research Centre 5 .org/action/displayJournal?jid=SPS Journal of Social Policy This journal carries high quality articles on all aspects of social policy in an international context. ‘The impact of having a sibling with an intellectual disability: parental perspectives in two disorders’. 201210. (2008). 37(2). H. & K. a selected review of key literature.DISABILITY POLICY – SOURCES FOR EVIDENCE Mulroy. Examples of articles published recently include: Bochel. ‘Incidence. M. Bochel. http://journals. Social Policy & Society. Robertson. The journal contains articles that draw upon contemporary policy-related research and associated developments in the social sciences. C. present new empirical data. Journal of Social Policy. and a themed section edited by guest editors. 175-274. L.. 7(2). Journal of Social Policy 37(2). Koot (2008). Worley ‘Marginalised or enabled voices? User participation in policy and practice’ (2008). Morris (2008). 52(3). Dean. types and characteristics of aggressive behaviour in treatment facilities for adults with mild intellectual disability and severe challenging behaviour’. & H.blackwellpublishing. Journal of Intellectual Disability Research. 7(1). Themed sections include an introductory piece. Aiberti. 167-185. and a guide to key sources in the area. ‘Choice and Values: Individualised Rational Action and Social Goals’. 52(2). Somerville & C. Each issue contains peer reviewed articles reflecting topical debates and issues within social policy. Journal of Intellectual Disability Research. H.cambridge. a set of peer reviewed articles. Leonard & C. 95-173. 1-12. http://www.. 251-270. advance theories. Articles are accessible to a wide readership which includes policymakers. Bower (2008). Social Policy & Society. K. Examples of recent articles include: Barnes. P. academics and students within and beyond the United Kingdom. P. S. http://journals.asp?ref=0964-2633&site=1 Social Policy & Society This is an international academic journal sponsored by the UK Social Policy Association.

Federal parliament is debating ratification.nsw. unmet demand for accommodation and respite. Summary of findings Australian Bureau of Statistics (ABS) The report presents a summary of results from the SDAC conducted by the ABS across Australia in 2003. NSW Parliamentary Library intellectual or sensory impairments. www. Disability Services Ageing and Carers 2003 (SDAC). The purpose of the convention is to promote. mental. community access and employment services. It came into force in May 2008. factors affecting levels of demand and how demand is expected to change over coming years.nsf/7d12b0f6763c78caca257061001cc588/c258c88a 7aa5a87eca2568a9001393e8!OpenDocument Current and future demand for specialist disability services Australian Institute of Health and Welfare (AIHW). www. historical overview of major developments in disability policy. June 2007 This report addresses the following key issues: profile of current CSTDA-funded service users. interface with other service sectors and how these affect demand for disability services.nsf/key/GovernmentPolicyan dServicestoSupportandIncludePeoplewithDisabilities UN Convention on the Rights of Persons with Disabilities Australia signed the convention in March 2008.abs. older people and carers. protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities.DISABILITY POLICY – SOURCES FOR EVIDENCE 3 Publications Government Policy and Services to Support and Include People with Disabilities Lenny Social Policy Research Centre 6 . www. www. Federal/State responsibilities including the Commonwealth State/Territory Disability Agreement (CSTDA) and the Home and Community Care (HAAC) Agreement. Persons with disability include those who have long-term physical. Federal and NSW Government disability support services. 2007 This is an informative resource which covers the following topics: theoretical perspectives on and to promote respect for their inherent Survey of which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with The primary objective of the survey was to collect information about people with disability.un.

gov. information on indigenous people with disability. and includes a review of Carers’ perspectives on caring: A qualitative analysis of open-ended responses to the Carer Health and Wellbeing Index survey 2007 Carers Australia and University of Canberra. an understanding of the carers role. includes a profile of specialist disability services. framework of performance indicators and key results and future directions in performance reporting. the impact of caring on health and well-being.carersaustralia. ‘Services for people with a disability’. Social Policy Research Centre 7 . and the needs of carers for respite and supported www.DISABILITY POLICY – SOURCES FOR EVIDENCE Report on Government Services 2008 Australian Government Productivity Commission Chapter 14. 2008 This report explores issues for carers of people with disability.pc.

and provides a forum for sharing information and publications about important issues in the disability sector. participatory and accessible society for people with disability. can be found on the SPRC website. other areas include economic and social inequality.nda. Disability is one of the main topics of inquiry. Children and Young People with a Disability. Current research projects recently completed or underway include the following. evaluation of health and community service policies and programs. The last CSTDA included contract research funding. Disability and Disability Studies and Research Centre (DSARC). • • • • • • • Effectiveness of Supported Living in Relation to Shared is located in the Faculty of Arts and Social Sciences at UNSW. Its research projects engage with the lived experience of people with disability. States and Territories responsible for the delivery of specialist disability support services to people with disabilities. contains information about the work of the National Disability Administrators. The Disability Policy and Research Working Group is responsible for selecting research projects on the basis that they have a joint State/Territory and Australian Government focus and seek to address national disability issues.unsw. Employment Innovation for High Support Needs Clients. families and children. older Information on each of these projects is available from the website.DISABILITY POLICY – SOURCES FOR EVIDENCE 4 Research and Academic Bodies National Disability Administrators (NDA) The National Disability Administrators (NDA) is the key national representative body for government agencies in the Commonwealth. DSARC promotes the social perspective of disability in education and research to maximise Australia’s capacity to ensure an equitable. Under the CSTDA governments contribute to a research and development trust fund for research into disability issues of national significance. www. and resulting publications. Further information on current and past disability projects. The SPRC conducts research and fosters discussion on all aspects of social policy in Australia. established in 1980. poverty and social exclusion. employment and labour market policies and programs. UNSW The Disability Studies and Research Centre (DSARC) is an inter-disciplinary national research centre at the University of New South Wales. Social Policy Research Centre 8 . Support Needs and Service Models for Younger People with High Clinical The NDA website. Monitoring Employment and Day Options Reforms. which examines significant disability policy issues relevant to the provision of specialist disability services. and comparative social policy and welfare state studies. Building Culturally Secure Services for Indigenous Australians with a Disability.sprc. Social Policy Research Centre (UNSW) The Social Policy Research Centre. The Disability Policy and Research Working Group is a working party to the Community and Disability Services Ministers’ Advisory Council (CDSMAC). www.

As well as undertaking and managing Centre for Developmental Disability Studies (CDDS) The Centre is a non-profit organization affiliated to the faculty of Medicine at the University of Sydney. The Acting Director is Rosemary Kayess. covering families with children with disabilities and parents with intellectual disability. can be found at www. teaching and clinical practice to inform policy and practice which have an impact on people with developmental It is aligned with the Social Policy Research Centre. the Faculty of Arts and Social Sciences and the Faculty of Law. The AFDSRC Team is comprised of professionals from a range of disciplines . and information on current and past Australian Family and Disability Research Collaboration (AFDSRC) The Australian Family and Disability Studies Research Collaboration is part of the Faculty of Health Sciences. psychology. is available on its website. promoting and addressing the issues faced by families of parents or children with disability.DISABILITY POLICY – SOURCES FOR EVIDENCE DSARC is developing a research program.usyd. Its research publications. social work . The broad aim of AFDSRC is to actively promote the full participation of these families in the life of their respective communities. Information about current and past research projects. particularly for researchers with disability.afdsrc.occupational therapy. University of Sydney.all of whom are committed to Social Policy Research Centre 9 . DSARC assists UNSW faculties to develop and deliver educational programs and improve research funding outcomes by identifying opportunities for collaborative research programs. email dsarc@unsw. www.cdds. an education program and a mentoring It designs and develops research.

The information on family arrangements in the CSTDA is sparse. and a limited dataset for the survey (a Confidentialised Unit Record File) has been available to researchers for Australian Bureau of Statistics (ABS) The ABS publishes a wide range of quantitative data and analysis on Australia’s population groups. and actual support provided. Australian Government. although in some cases. Disability support services 2005 – 06: National data on services provided under the Commonwealth State/Territory Disability Agreement. The most recent survey (2003) included information on 41. SDAC is a nationally representative household survey conducted by the ABS every five years. living arrangements (for example whether they live alone or with family members). www.aihw. CSTDA data are only about people who actually receive at least one disability-related service. Adults who were identified as having a Social Policy Research Centre 10 . a subset of all people with disability.aihw. other responsible people in the household were asked to identify household members with disability. www. In the survey. primary disability type.aihw. Recent reports include: Australian Institute of Health & Welfare (2007).gov. The most relevant dataset is the Survey of Disability. The information is collected by service providers for State and Territory governments about service users of each service they provide – their sex. Ageing and Carers (SDAC) 2003 listed above in key POLICY – SOURCES FOR EVIDENCE 5 Data Sources Commonwealth State and Territory Disability Agreement National Minimum Dataset Commonwealth and State/Territory Disability Agreement National Minimum Dataset (CSTDA-NMDS) contains annually updated administrative records on specialist support services for people with disability that are funded by Commonwealth and State/Territory governments. and of people with service needs. Australian Institute of Health and Welfare (AIHW) The AIHW publishes a range of reports on disability. Australian Government. support needs.233 people. Australian Institute of Health & Welfare (2003).au/publications/index. indigenous status. Their datasets include the CSTDA-NMDS and analysis of ABS datasets. The data are collated centrally by the Australian Institute of Health and Welfare (AIHW) after transfer from the State and Territory government. including people with disability. Disability prevalence and trends.cfm/title/9671 Other reports are available at www. residential setting (including if they live in boarding houses or hostels for homeless people). NSW data are held by DADHC. respondents were for the most part asked to self-identify as having a disability or long term health condition.

motels. It is a good dataset for estimating support needs. or another household member was interviewed on their behalf if for example their disability prevented them from easily communicating with the interviewer. the sample also included people with other living Social Policy Research Centre 11 . ABS reports are available at www. The SDAC is for the most part a household survey (of people who live in private households). non-private dwellings such as hotels. and self-care components of retirement villages. including short-term caravan However. boarding houses.DISABILITY POLICY – SOURCES FOR EVIDENCE disability were personally interviewed. this analysis only uses highly summarized information on major classes of disability and health restrictions. While detailed information of a wide range of disabilities was collected in the survey. New South Wales Department of – organisation of people with disability NSW Council for Intellectual Disability Disability and Home Care (DADHC) – organisation of people with disability Women With Disabilities Australia – organisation of disability service providers Other disability organisations are listed at / – organisation of people who support people with disability National Disability Services (NDS) ACT Disability ACT (Department of Tasmania Disability Services Program (Tasmanian Department of Health & Human Services) 6.2 Government Disability Agencies Australian Government Department of Queensland Disability Services Queensland Other Sources of Evidence Based Practice Disability Peak Bodies Australian Federation of Disability Organisations – organisation of people with disability Aboriginal Disability Network Social Policy Research Centre 12 . Community Services and Indigenous Affairs Victoria Disability Services Division (Victorian Department of Human Services) www.DISABILITY POLICY – SOURCES FOR EVIDENCE 6 South Australia Department for Families and Communities .org.carersaustralia.Disability Services www.wwda.pwd. Housing & Community Australian Capital Territory) – organisation of people with disability Carers NSW www. – organisation of people with disability Multicultural Disability Advocacy Association of NSW Western Australia Disabilities Services Commission – national peak body of people with disability groups People With Disability Australia (PWD) www.

gov. journals and conferences POLICY – SOURCES FOR EVIDENCE Northern Territory Aged and Disability Program (Northern Territory Department of Health and Community Services) www. contains the latest on community sector This weekly e-newsletter produced by TRI Community Exchange Inc.4 Mailing Lists Relevant to Policy Change FaHCSIA Disability e-news: National Disability Administrators. national body of disability government agencies (Section 4) The e-news is a regular sector update to keep people informed about FaHCSIA disability issues.php?content=5 Centre for Disability Studies 6.nt. including information on Social Policy Research Centre 13 CommunityNet e-news: communitynet@tricomm.3 International Resources Disability Studies Net – international links to main research organisations.disabilitystudies.

. Canberra: Australian Institute of Health and Welfare Fisher. SPRC Report Series 2/07.R. Disability and Home Care (DADHC) (2006a). Millbank Memorial Fund. Social Policy Research Centre 14 . & Fisher.R. E.pdf. Dadich. S. Abelson. Stronger P.DISABILITY POLICY – SOURCES FOR EVIDENCE References Australian Institute of Health and Welfare (AIHW) (2007a). O. Accommodation and Support Paper. (2006b). Bleasdale. M. & Griffiths. accessed 16 July 2007. Thaler. www. Abelló. D. report prepared for Disability Policy and Research Working Group. accessed 16 July 2007. June 2006. Disability Support Services 2004-2005: National Data on Services Provided under the Commonwealth State/Territory Disability Agreement. R.dadhc. (2007). Purcal. report prepared for the NSW Department of Health. Current trends and implications for the 21st century.. C. K. Sydney. M. Stone. K.millbank. Parker..nsw... (2000) Long term care the elderly and disabilities. Muir. Effectiveness of Supported Living in Relation to Shared Accommodation.. K.dadhc. Housing and Accommodation Support Initiative Evaluation: Report (2007). http://www.. http://www. Pickering. SPRC Report Series .. A New Direction for Disability Services in NSW NSW Department of Ageing.